Visiting the 2 new babies in our family,
and she got to hold them both at the same time!
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Coloring Easter eggs
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She wanted to wear a headband.
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Hide-and-go-seek
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Lemons!
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Sunday, May 10, 2015
Saturday, May 9, 2015
Back in the Game
The walking game, that is. She's back! And thank goodness because the lack of the walking has been really tough on her. We put her on the DL about a month ago after she had the issue with her foot. It was rough, mostly at school. We had been taking the braces to school everyday, and her teachers commented that she was sad and a little withdrawn for those first couple days that she couldn't walk. To have that mobility, and then have it taken away was hard. She got used to being upright and feeling much more normal and like all the other kids.
We were finally able to get the current set of braces fixed and we're now back in action. I had taken her to the cranial-sacral therapist 2 weeks ago and asked her what she thought of Leah's feet. Her response was that her feet have very high arches and the braces offered no arch support, so her feet were pronating outward, causing the 5th metatarsal to splay out. They were also starting to club a little bit, which means that they were losing a little bit of their flexibility. She did a lot of stretching and working Leah's feet and ankles, and recommended we find an insert or orthotic that will offer more arch support. On Friday we had an appointment with an orthotics company, who put some side cushions and ankle straps to offer her feet more support. Now she's able to be back in the braces, and she's a ton happier!
I have to admit, that we cheated a little bit and let her do a little bit of walking for 30 minutes on occasion. As with all of the things we do, it's about balance and we felt that it was just as important to her mental health to give her the independence as it was to her physical health to take care of her feet. We'll ease back into the walking, which is partly why we got to this point. Before February, the most she ever spent in a standing position was maybe an hour a day, at best. To go from that to 4 hours almost overnight put a lot of pressure on her feet. That and the fact that she's jumping and bouncing on her feet put extra stress on her body. It will be nice for her to go up to 2 hours next week at school and then hopefully over the next couple weeks we can have her in it unlimited. It makes her so much happier when she can walk, and it makes us happy to see her so happy!
We were finally able to get the current set of braces fixed and we're now back in action. I had taken her to the cranial-sacral therapist 2 weeks ago and asked her what she thought of Leah's feet. Her response was that her feet have very high arches and the braces offered no arch support, so her feet were pronating outward, causing the 5th metatarsal to splay out. They were also starting to club a little bit, which means that they were losing a little bit of their flexibility. She did a lot of stretching and working Leah's feet and ankles, and recommended we find an insert or orthotic that will offer more arch support. On Friday we had an appointment with an orthotics company, who put some side cushions and ankle straps to offer her feet more support. Now she's able to be back in the braces, and she's a ton happier!
I have to admit, that we cheated a little bit and let her do a little bit of walking for 30 minutes on occasion. As with all of the things we do, it's about balance and we felt that it was just as important to her mental health to give her the independence as it was to her physical health to take care of her feet. We'll ease back into the walking, which is partly why we got to this point. Before February, the most she ever spent in a standing position was maybe an hour a day, at best. To go from that to 4 hours almost overnight put a lot of pressure on her feet. That and the fact that she's jumping and bouncing on her feet put extra stress on her body. It will be nice for her to go up to 2 hours next week at school and then hopefully over the next couple weeks we can have her in it unlimited. It makes her so much happier when she can walk, and it makes us happy to see her so happy!
Friday, May 8, 2015
Little Celebrity
We have had a brush with fame recently! Last weekend Leah was the feature video at a gala for PACER, the organization that did her tractor. It was a great event! They had a huge silent auction at the Minneapolis Convention Center, and then a performance by Crosby, Stills, Nash. All of our parents were there, and we both had a large group of friends and co-workers to celebrate with us. It was a great evening.
Here is a link to the video: https://www.youtube.com/watch?v=dgPoa2OccsE
Then earlier this week our neighbor brought over a copy of the local weekly newspaper, and Leah was on the front page! She was on the cover with Minnesota Governor, Mark Dayton, who was at her daycare to celebrate the groundbreaking on a big expansion. Our little superstar! Apparently she asked to have her photo taken with him, and then proceeded to tell him all about how Grandma and Grandpa would be picking her up from school that afternoon. Very important things to a 3-year old.
Here is a link to the video: https://www.youtube.com/watch?v=dgPoa2OccsE
Then earlier this week our neighbor brought over a copy of the local weekly newspaper, and Leah was on the front page! She was on the cover with Minnesota Governor, Mark Dayton, who was at her daycare to celebrate the groundbreaking on a big expansion. Our little superstar! Apparently she asked to have her photo taken with him, and then proceeded to tell him all about how Grandma and Grandpa would be picking her up from school that afternoon. Very important things to a 3-year old.
Wednesday, May 6, 2015
Saying Good Bye
I am so sad to share that we lost our beloved friend, Jack, recently. Jack had been with us for almost 13 years. We got him not long after I moved to Minneapolis, just a couple months before we got married. He wasn't a typical cat, preferring to hang around people and running towards a ringing doorbell. No one was a stranger to Jack, he loved everyone. Even repairmen who came to the house commented on what a friendly cat, almost annoyingly friendly when he wanted to be petted. I dared anyone who said they didn't like cats to spend 5 minutes with this guy!
About 2 years ago, Jack became diabetic. We kept him comfortable for a long time and he was his typical self. In the last couple weeks, though, he'd been drinking a lot more water and seemed to get skinnier. Finally one weekend he really went down hill, stumbling a little when he jumped off the couch. Ty went home at lunch on a Wednesday to find him laying on the floor next to his water dish. That's when we knew it was time. I came home early and we drove him to the vet. I knew he was ready to go when he laid on my lap in the car, barely moving. At one point, he looked up at me and then over to Ty, as if to say his final good-bye. Just 15 minutes later, we were bringing him home and burying him in the backyard. It was a beautiful afternoon to sit and remember the cat that was friends with everyone.
How do you tell a 3-year old about death? We told Leah that Jack's body didn't work, he was old and very sick and couldn't get better, and that he wouldn't come back anymore. That was the hardest part, trying to explain that he's not coming back. She still asks about him, but she knows that he's now in Heaven and we keep him in our hearts and in our memories. There's nothing sweeter than hearing her pray for Jack at dinner, and saying that he was a good friend. She's right, he was a good friend.
About 2 years ago, Jack became diabetic. We kept him comfortable for a long time and he was his typical self. In the last couple weeks, though, he'd been drinking a lot more water and seemed to get skinnier. Finally one weekend he really went down hill, stumbling a little when he jumped off the couch. Ty went home at lunch on a Wednesday to find him laying on the floor next to his water dish. That's when we knew it was time. I came home early and we drove him to the vet. I knew he was ready to go when he laid on my lap in the car, barely moving. At one point, he looked up at me and then over to Ty, as if to say his final good-bye. Just 15 minutes later, we were bringing him home and burying him in the backyard. It was a beautiful afternoon to sit and remember the cat that was friends with everyone.
How do you tell a 3-year old about death? We told Leah that Jack's body didn't work, he was old and very sick and couldn't get better, and that he wouldn't come back anymore. That was the hardest part, trying to explain that he's not coming back. She still asks about him, but she knows that he's now in Heaven and we keep him in our hearts and in our memories. There's nothing sweeter than hearing her pray for Jack at dinner, and saying that he was a good friend. She's right, he was a good friend.
Thursday, April 23, 2015
Travel
A few weeks ago, Leah and I took a little trip. Traveling with a 3-year old who has a wheelchair and is starting to walk more often posed a challenge. How in the world am I going to schlep all her crap through the airport? This trip had been planned for a long time. Several months ago, I bought plane tickets for Leah and I to visit 2 new baby girls who would be joining the family this spring. When Leah started walking, I knew she'd want to bring her braces and walker to play with her cousins. I asked her if she'd rather have her walking stuff or her zip-zac, she chose walker. Ok, I can do this, right?
This was just a solo trip with Leah and I. I knew I wanted to have only carry-ons, as my hometown airport is slow at baggage claims, and we'd be getting in late. I'm also stubborn and hate checking bags, unless absolutely necessary. So after much thinking and staring at everything, I figured out a way that I could handle everything on my own. Ty was able to get a gate pass and help me through the Minneapolis airport; my dad got one when we landed, but I didn't want to rely on someone else to help me in case I had to do it on my own.
We were going to be gone for 3 full days, 4 nights, so I needed a full suitcase, and I also brought a backpack. Leah had her wheelchair, plus the little backpack on the chair, so I was able to push her through the airport. I strapped her braces to the front of my rollerbag and slid the walker over the handle on the suitcase. Voila! It worked. Well, until I had to get on the plane. Then I'll be honest, I was a bit of a sh*tshow. Ty got me through the Minneapolis airport, which is quite big, to our gate. When we checked in, we had requested a wheelchair assist at the gate. The guy was a bit surprised... well, actually kind of shocked, to see a little 3-year old girl. He was nice enough, though, and used the wheelchair to help me get some of my bags down the jet bridge to the plane.
The thing I wasn't quite prepared for was how much crap I actually had to carry ON the plane, and I had to do that all by myself. Seriously, why can't parents of special need kids automatically grow 3 extra arms? I left the wheelchair and walker and my rollerbag at the gate-side check on the jet bridge. Thank god for that gate-side check, I couldn't have handled bringing on my damn rollerbag as well. I didn't trust them with her braces, so I wanted to bring those on the plane, which I also had to do with the stick handle for the chair. A backpack on my bag, and another that I had to carry, and oh sh*t! I have to carry my child on the airplane too, because of course she can't walk... that's why I need all this crap. Where are my extra arms when I need them? I was a walking circus. But I'll be damned if I didn't get everything on the plane, and more miraculously, everything OFF the plane in 1 piece. It was all worth it when I saw her running around the house with her "brothers." Totally 100% worth it.
This was just a solo trip with Leah and I. I knew I wanted to have only carry-ons, as my hometown airport is slow at baggage claims, and we'd be getting in late. I'm also stubborn and hate checking bags, unless absolutely necessary. So after much thinking and staring at everything, I figured out a way that I could handle everything on my own. Ty was able to get a gate pass and help me through the Minneapolis airport; my dad got one when we landed, but I didn't want to rely on someone else to help me in case I had to do it on my own.
We were going to be gone for 3 full days, 4 nights, so I needed a full suitcase, and I also brought a backpack. Leah had her wheelchair, plus the little backpack on the chair, so I was able to push her through the airport. I strapped her braces to the front of my rollerbag and slid the walker over the handle on the suitcase. Voila! It worked. Well, until I had to get on the plane. Then I'll be honest, I was a bit of a sh*tshow. Ty got me through the Minneapolis airport, which is quite big, to our gate. When we checked in, we had requested a wheelchair assist at the gate. The guy was a bit surprised... well, actually kind of shocked, to see a little 3-year old girl. He was nice enough, though, and used the wheelchair to help me get some of my bags down the jet bridge to the plane.
The thing I wasn't quite prepared for was how much crap I actually had to carry ON the plane, and I had to do that all by myself. Seriously, why can't parents of special need kids automatically grow 3 extra arms? I left the wheelchair and walker and my rollerbag at the gate-side check on the jet bridge. Thank god for that gate-side check, I couldn't have handled bringing on my damn rollerbag as well. I didn't trust them with her braces, so I wanted to bring those on the plane, which I also had to do with the stick handle for the chair. A backpack on my bag, and another that I had to carry, and oh sh*t! I have to carry my child on the airplane too, because of course she can't walk... that's why I need all this crap. Where are my extra arms when I need them? I was a walking circus. But I'll be damned if I didn't get everything on the plane, and more miraculously, everything OFF the plane in 1 piece. It was all worth it when I saw her running around the house with her "brothers." Totally 100% worth it.
Sunday, April 19, 2015
Benched
Well, we have had our first set-back in our walking situation. A little over a week ago, her teachers at daycare alerted me to a funny bump on her right foot. It did look a little odd, just on the outside of the foot, on the bone. We got in the next day to see Dr. Marker. He had a couple X-rays taken, which thankfully showed that her foot wasn't broken, but sadly, he thought it was from her foot rubbing on her braces. He ordered her off the braces until we could get fitted for new ones. NOOOOOO!! The process to get new braces is long and kind of a pain in the you-know-what. I was pretty frustrated and sad. This meant that she couldn't do any walking at school or at home. Just when she was getting so good too!
I can understand how this happened. She went from spending very little time standing up to being in it for hours each day. It's her primary and preferred way of getting around at school, and she loves walking at home. Just the weekend before, she had been running around the backyard for 2 hours. So, we followed the doctor's orders and kept her out of the braces. Instead, she wheeled at school, which wasn't ideal, for either of us. Wheeling isn't as fun, nor is it as tiring.
Getting new braces is a long affair. First we have to get an appointment, then they have to cast the mold, make the braces, and we have to have them fitted and adjusted. That adjustment alone is 3-4 hours, on top of the month plus that it took to make them. We'd be looking at mid-May to get something new. So, we've improvised a bit. Ty was able to bend the foot brace out slightly to take pressure off the foot, and I got athletic tape to wrap her foot. We are also limiting her time in the braces, and only having her in them at home so we can closely monitor her feet. It's not ideal, but for a little girl who constantly wants to walk, it's what we felt was right.
It's again another reminder of the constant vigilance over her legs and feet, and how we're different. But Dr. Marker told us that feet sores is a big reason older kids wind up in the hospital. They don't pay attention to their feet and legs, and things like this get left unnoticed. A good reminder to us to practice good maintenance. Luckily, her feet don't have sores or blisters, but this little bump is a little concerning. It's going down, which makes me think that it probably does have something to do with her braces. For now, we'll keep watching, and trying to figure out the best balance between keeping her healthy while still promoting independence and pushing ahead in her walking journey. In the grand scheme of things, though, this is a small step back. Lots and lots of steps ahead in the last 2 months to still make us very proud.
I can understand how this happened. She went from spending very little time standing up to being in it for hours each day. It's her primary and preferred way of getting around at school, and she loves walking at home. Just the weekend before, she had been running around the backyard for 2 hours. So, we followed the doctor's orders and kept her out of the braces. Instead, she wheeled at school, which wasn't ideal, for either of us. Wheeling isn't as fun, nor is it as tiring.
Getting new braces is a long affair. First we have to get an appointment, then they have to cast the mold, make the braces, and we have to have them fitted and adjusted. That adjustment alone is 3-4 hours, on top of the month plus that it took to make them. We'd be looking at mid-May to get something new. So, we've improvised a bit. Ty was able to bend the foot brace out slightly to take pressure off the foot, and I got athletic tape to wrap her foot. We are also limiting her time in the braces, and only having her in them at home so we can closely monitor her feet. It's not ideal, but for a little girl who constantly wants to walk, it's what we felt was right.
It's again another reminder of the constant vigilance over her legs and feet, and how we're different. But Dr. Marker told us that feet sores is a big reason older kids wind up in the hospital. They don't pay attention to their feet and legs, and things like this get left unnoticed. A good reminder to us to practice good maintenance. Luckily, her feet don't have sores or blisters, but this little bump is a little concerning. It's going down, which makes me think that it probably does have something to do with her braces. For now, we'll keep watching, and trying to figure out the best balance between keeping her healthy while still promoting independence and pushing ahead in her walking journey. In the grand scheme of things, though, this is a small step back. Lots and lots of steps ahead in the last 2 months to still make us very proud.
Friday, April 3, 2015
In The News
Last week some friends of ours were featured on the news here locally. They found out their baby girl would have Spina Bifida in a very similar way we did, and they elected to have fetal surgery. They are a very sweet couple and their darling little girl just turned 1. We were lucky to meet them while they were still deciding whether to have the surgery, and now see them at different SB events. It's neat to see a family we know be featured, and also to see that fetal surgery will soon be offered here in Minnesota.
There are a couple parts to the news story, though, that I have a hard time with. Where it says: "tests revealed the damage on baby's spine was higher than originally thought and could cause brain damage after birth." This was the same diagnosis that we got, and while it sounds scary, this is why she has a shunt. What they should have said was it could cause brain damage after birth... if left untreated! Anyone who spends more than 15 seconds with Leah knows she doesn't have brain damage.
The other thing they said, "A gap in the spinal cord is typically repaired after a baby is born and is followed by a childhood filled with physical therapy." No playing? No friends? Hours and hours of PT. Wow, that sounds pretty awful. Something no kid, or parent would want, right? Not so fast! Leah has been in PT, most kids with SB get some kind of PT on a regular basis, but it's fun! At least Leah's was fun, she was learning through playing and we did additional activities here at home. The only burden on us was making the time to do it.
I get that things need to be sensationalized for the sake of viewership, but it doesn't tell the whole truth. Spina Bifida isn't a terrible, horrible diagnosis. There is still a lot of joy and happiness. Life is slower, maybe, but not worse. That's where I get defensive about SB, when others portray it as a worse-off situation. It's also hard to see this surgery being touted as a life-changing surgery and giving kids better outcomes. It may be life-changing but it's not life-saving, and that's why we didn't do it. Should we have? Would it have made a difference? It's hard not to look back sometimes and wonder.
Either way, fetal surgery or not, kids with Spina Bifida DO have additional physical challenges, but it doesn't mean that their childhood can or shouldn't be any different than "regular" kids. And fetal surgery or not, Leah's life is just as filled with happiness as anyone else's.
Enjoy meeting our friends and fellow SB family!
http://kstp.com/news/stories/S3749222.shtml
There are a couple parts to the news story, though, that I have a hard time with. Where it says: "tests revealed the damage on baby's spine was higher than originally thought and could cause brain damage after birth." This was the same diagnosis that we got, and while it sounds scary, this is why she has a shunt. What they should have said was it could cause brain damage after birth... if left untreated! Anyone who spends more than 15 seconds with Leah knows she doesn't have brain damage.
The other thing they said, "A gap in the spinal cord is typically repaired after a baby is born and is followed by a childhood filled with physical therapy." No playing? No friends? Hours and hours of PT. Wow, that sounds pretty awful. Something no kid, or parent would want, right? Not so fast! Leah has been in PT, most kids with SB get some kind of PT on a regular basis, but it's fun! At least Leah's was fun, she was learning through playing and we did additional activities here at home. The only burden on us was making the time to do it.
I get that things need to be sensationalized for the sake of viewership, but it doesn't tell the whole truth. Spina Bifida isn't a terrible, horrible diagnosis. There is still a lot of joy and happiness. Life is slower, maybe, but not worse. That's where I get defensive about SB, when others portray it as a worse-off situation. It's also hard to see this surgery being touted as a life-changing surgery and giving kids better outcomes. It may be life-changing but it's not life-saving, and that's why we didn't do it. Should we have? Would it have made a difference? It's hard not to look back sometimes and wonder.
Either way, fetal surgery or not, kids with Spina Bifida DO have additional physical challenges, but it doesn't mean that their childhood can or shouldn't be any different than "regular" kids. And fetal surgery or not, Leah's life is just as filled with happiness as anyone else's.
Enjoy meeting our friends and fellow SB family!
http://kstp.com/news/stories/S3749222.shtml
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